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Posted 3/20/2013 3:33 PM (GMT 0)
My GI Dr. has kept me Entecort for a year and half now because the inflammation.  How long is too long to be on this medication?
Posted 3/20/2013 3:50 PM (GMT 0)
six months is the recommended max duration. Others have been on as long as you. Are you experiencing side effects?
Posted 3/20/2013 5:32 PM (GMT 0)
I'm gaining weight and my face seems to be a bit puffier than it used to be and I feel like muscles are much weaktier than a year ago.
Posted 3/20/2013 5:51 PM (GMT 0)
Sounds like the steroids are getting to you. Tell your GI you want off the entocort.
Posted 3/20/2013 6:00 PM (GMT 0)
My thoughts too but, its hard telling the DR what to do......I can be a chicken sometimes.
Posted 3/20/2013 6:01 PM (GMT 0)
I did go in for a colonoscopy about 3 weeks ago and have a follow up apt. on April 2nd. At that time, i'll mention it to him. Is it feasible to go off the meds completely if the inflammation is under control? Just wondering if others have done this in the past.
Posted 3/20/2013 6:01 PM (GMT 0)
It's your health and your body. Not your DR's. Take someone with you to your next appointment who can be your advocate, or give you a confidence boost.
Posted 3/20/2013 6:04 PM (GMT 0)
Great advice, thank you! :)
Posted 3/20/2013 6:20 PM (GMT 0)
I was on Entocort for about 6 years without any side effects. I had a flare in 2010 and was on prednisone, so I stopped Entocort and didn’t start it back up after tapering pred. I’m back on it after a recent flare, but I’m hoping to taper off of it sooner this time.
Posted 3/20/2013 6:25 PM (GMT 0)
Just saw your later posts--yes, if you're having side effects, get off of Entocort. I believe that it's best to taper off of it rather than quit cold turkey. No Dr should disagree with cutting back on Entocort slowly and seeing how you feel.
Posted 3/20/2013 6:34 PM (GMT 0)
I've been on Entocort for the last 2 months, have about another week but was told that was long enough and no more from the GI.
No side effects here.
Posted 3/20/2013 6:41 PM (GMT 0)
That's wonderful! If you can get relief without side effects you doing good. My concern is the long term effects on the rest of my body from the steriods. Will you change to a different med after the Entocort?
Posted 3/20/2013 6:54 PM (GMT 0)
fairweathergirl, if you are doing well on Apriso you should be able to tolerate Pentasa, which will treat the terminal ileum. This is a reasonable maintenance med for when you get off entocort.
Posted 3/20/2013 7:19 PM (GMT 0)
The Apriso doesn't bother me at all and infact I'm now taking 3 a day because I was having issues a few months back with burning in my stomach so my DR upped the dosage. Sounds like I need to talk with my GI Dr.
Posted 3/20/2013 7:33 PM (GMT 0)
The burning in your stomach is probably from GERD brought on by the entocort. Yes, you need to talk to your DR.
Posted 3/20/2013 7:50 PM (GMT 0)
I have been on Entocort for 1 1/2, too. What's the dose you are on? I was on 3 mg for a 2 months and then the dose was upped to 6 mg. Starting march 7th, my GI decided to up the dose again to 9mg. He did that because he decided to replace Entocort by Imuran. Since Imuran won't kick in before 3 months, he thought of covering my intestines.
If you feel you have become better, ask for tapering it. If not, ask for an alternative.
Hope you feel better soon:)
Posted 3/20/2013 8:41 PM (GMT 0)
As I understand it, entocort shouldn't have long-term effects on your body (liver, bones, etc.) unless a larger amount of it is absorbed into your bloodstream, in which case you'd show symptoms of steroid use (like puffy face). When that happens, you might as well be taking prednisone, which is not good long term. I would rather not stay on it, even without side effects, because at least some steroid does get absorbed into your blood stream, so some negative effects are possible over the very long term.

I would also like to go into remission again, but that might just be wishful thinking!
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